The Hospital Stay

We took Elsie to the Children's Hospital in Milwaukee earlier this week for a bunch of tests to see if they can figure out what's causing her seizures, hypotonia and developmental delays.

This is a ridiculously long post, so the summary for those of you who don't want to read about it in excruciating detail is that she did really well, they got all the tests done that they wanted and that we most likely won't find out anything for weeks, because at this point they've eliminated all the more common causes that they can test in-house, so the tests need to be sent out to various labs around the country.

On to the novel:

Prologue
Elsie woke up Sunday night very congested. Panic ensues on my part, as the last time she was sedated, they told us ahead of time to call and cancel if she was sick. As we have rearranged our lives and my dad's to get this hospital visit done, we just hoped it would be okay.

Chapter One: Monday
We got to the hospital shortly before noon and they took us to the room. It was set up to be a double, but E's name was the only one on the board. Whew. Later they told us that they use them as single rooms now. I cannot imagine two families being crammed in one of those rooms -- stir crazy for sure!

We met with a bunch of doctors throughout the afternoon, including her neurologist, who was the attending on duty throughout our stay. It's a teaching hospital, so there were more than the usual people popping in and out, pretty much all asking the same questions and all wanting to examine her. Six months ago she would have been screaming the entire time, but she did great. Smiled at everyone and let them manhandle her -- as long as they didn't mess with her hands too much.

Shortly before her bedtime, a nurse came in to put in her IV. They were going to start her on fluids at midnight (when she was no longer going to be allowed to eat or nurse due to sedation in the morning) and wanted to have it all set up ahead of time. Midnight comes and the night nurse hooks her up and starts the fluid. The thing beeps. Nurse comes back, messes with it, thinks it's fixed. Beeps again. Nurse comes back, fixes it. Beeps again. Nurse calls another nurse and they put in a new IV in her other hand, but leave the first one in, too, "just in case." New one works, but not a lot of sleep is had by anyone. I woke up every time E. made any sound, plus the sleeper sofa was not exactly meant for two adults, since you couldn't stretch your legs out if you were on the inside -- and if you were on the outside, they hung off the edge. And we're not super tall, so who are these made for??

Chapter Two: Tuesday
A woman from the lab came in at 7am to draw blood, then various other personnel started coming in to talk about what was going to happen today. I asked the chief resident (I think that's what she was -- maybe I'm just throwing around terms from Scrubs and Grey's Anatomy... ) about her congestion, and she said it was probably fine, but the anesthesiologist would tell us if it wasn't.

Elsie was scheduled for an MRA, which is like an MRI but with contrast dye, to see what the deal was with the spot in her brain that showed a flow issue during her MRI a couple of weeks ago. They wanted to have her lumbar puncture -- aka spinal tap -- while she was still sedated from the MRA, so they had to coordinate those two things. They said they go in order by age, so they were hoping she'd be near the top of the list. There was never an exact time for anything while we were there, other than starting the IV and checking her vitals, which drove me crazy. I'm sure it's hard to get things figured out when you're dealing with so many different departments and then kids on top of that.

They took out the first IV that didn't work, which I'm sure she appreciated. She may not have good motor skills, but having both hands taped to boards limits what you can do. She did seem to enjoy whacking stuff with the boards, though. Hee.

I think it was around ten that they finally came to get her. Ray went along; I stayed behind because it freaks me out when she's sedated. An hour or two later a geneticist came in to see her, saying that he'd been told she was back. Nope. He said he'd come back later and we never saw him again! We had talked to another member of his team the day before, so I guess that meant she'd found out everything he needed? Weird. Ray came back alone shortly after that, as they were taking her for the LP and he didn't want to see it. Despite being sedated, E. had moved several times during the MRA, including once when there were only eight seconds left, so it took longer than normal, since they had to keep starting over. The LP took about an hour, I think. Apparently everyone's spinal fluid drips at a different rate, and hers was slow. They also drew some more blood as long as she was sedated.

She was still out when she came back and slept for about three more hours! She woke up and played for a while, then ate a big dinner. I'm sure she was starving after not eating since the night before. A dermatologist came in to talk about her skin biopsy in the morning and we also were told that she was going to do the "B6 (Pyridoxine) Challenge", which sounds a lot more fun than it actually was. There are a small percentage of people whose seizures can be controlled by a large dose of B6, so they hook her up to the EEG stuff, monitor for an hour to establish what's "normal" for her, then give her the pyridoxine and monitor for a couple more hours. If it works, it would show up pretty much right away.

Chapter Three: Wednesday
The theme for Wednesday was definitely waiting. We didn't have to wait too long for the skin biopsy. The dermatologist had told us nine and they came about a half hour after that. The nurse had applied some topical cream to numb the area (on her back near her underarm), then they took what she described as a tiny cookie cutter the size of a pencil eraser to get the skin sample. They're going to do some tests to check cellular function, I think. It all starts to run together... E. cried a bit, but not nearly as much as when she gets a bath, so it mustn't have been too bad.

We thought the EEG was going to be in the morning, so we waited. And waited. Finally around 11 or so, the nurse practitioner from the EMU (epilepsy monitoring unit?) came in to talk to us about the challenge. She said they normally monitor it overnight, but that they were making an exception for us -- sounded like her neurologist threw his weight around a bit, bless him, to get us out of there that same day -- and it would be a 3-4 hour test. They had to discharge a kid, and when that was done, it would be E's turn. Ray went along again (I have dubbed him the procedure guy) to hook up her leads. She came back smelling of adhesive with her head wrapped and the cords in this little bag that you had to wear like a purse if you were holding her. We didn't order lunch, since we thought she'd be moving rooms soon. Not so. At one a nurse came in and said that the room was empty, they just needed to clean it and we'd be in within the hour. She said she's make sure the food found us if we moved before it got there, so we ordered lunch for E. and figured we'd get our own later. At this point I was really starting to worry, since my dad was watching O. and I knew he needed to be back home for a meeting at ten the next morning -- and it's a four hour drive if you don't stop at all.

Her neurologist came in, and told us that the tests they were able to do in house had been normal, other than that there were more white cells in her spinal fluid than normal, but that they weren't the infection-fighting kind, so he wasn't sure what to make of that. The MRA came back fine. The neurologist said that the abnormal flow on the MRI sometimes happens if the blood moves more or less quickly than "normal", but that it wasn't an issue. This rules out the possibility of there being something in there that would cause a brain aneurysm, which we didn't know we should even be potentially worried about, so that's good! He also said that the geneticists had only suggested one test that hadn't been already run by her neurologist up here, but that he would talk to them again. He seemed a little irritated that they didn't have more ideas, which I found kind of funny.

A bit before three o'clock, they finally came to get us. We moved to the EMU, which had nicer rooms, but with one big wall that was all glass, I guess so they can see the seizures better. They also had video cameras that recorded her at all times. I'm glad we didn't have to be in there the whole time. You have so little privacy the way it is in the hospital, even with normal walls! Ray went to get us lunch finally. The EMU nurse who came in asked me if it smelled like vomit (it didn’t, for the record), so I’m thinking that explains the extra wait.

After at least an hour and a half -- not the hour we were told -- they put in the B6. After an hour of that, they were going to give her a big dose of the new seizure medication we're trying, which was supposed to make her sleepy. They needed a urine sample and she peed out of the collecting bag twice, so the nurse was going to use a catheter once she was asleep. It was at least another hour and a half before they came in to give her the medication, which needed an hour to finish dripping through the IV. I was pretty much constantly on the verge of tears at this point, since we *had* to get home and it was getting later and later. Elsie was also completely out of patience, and wouldn't eat or nurse. She was obviously tired, so we thought that she'd go to sleep easily. No so. The medication didn't seem to make her sleepy at all! She was pretty much crying nonstop at this point, and the poor baby was awake for the catheter. They kept telling us that someone from the neuro team would be in soon to talk to us -- for hours we were told that.

Finally the neurologist overseeing the EEG came in and said that there was some kind of emergency that was keeping E's neuro from seeing us, but that he wanted to keep her overnight for more observation to see if the B6 was working. Honestly, I'm shocked that I didn't burst into tears right then, but I said that we couldn't because we had to get home to our son. Then he said, "Well, I think she had a seizure since we've given it to her, so then you don't need to stay anyway. I'll go double check." Um, WHAT?! Why would you try to make us stay overnight if we don't actually need to? She hadn't had a seizure that we had noticed, but he came back and said that there was a time when she had stared off and her brain activity had slowed, which to us appeared like she was maybe going to finally give in and go to sleep, but was apparently a type of seizure. She gets like that sometimes right before she has the kind where she tenses up, so maybe she's having them more often then we think. The nurse started getting the paperwork together and the technician came in to take the leads off (man, does the adhesive remover stink!). Our neurologist came in then and apologized for not being able to spend more time with us, they'd had a kid with blood on the brain. Eek. He told us to call Friday or Monday to follow up. We finally got out of there at 9 pm and got home at 10:45.

Epilogue
Now we're waiting some more, but at least we get to wait at home. ;) The tests she's had previously had ruled out the common causes, so most of the tests need to be sent out to various places and take weeks for the results. As the one intern put it, we're looking at the oddballs now. Ha!